Home » PatientLikeMe

Category Archives: PatientLikeMe

New websites launched for people looking to join a clinical trial; but will patients want a ‘coming together’ at some point?

This week, patients got a couple more options for finding out about clinical trials they can take part in.

Patientslikeme (which was launched in the United States a few years ago) has unveiled its new new clinical trials site which you can find here.   Patientslikeme is capturing a lot of attention here in the UK and one can see why.  Although this is still very much a first generation clinical trials site for so-called ‘willing patients,’ I like how it presents options and choices. Its interoperability with other parts of the Patientslikeme site (including the option to join other patients online) is also to be commended.  It is well worth a look.

Meanwhile in the States a new site called Reg4All has been launched by the non-profit Genetic Alliance (not to be confused with the UK’s own Genetic Alliance).  This one’s a register, inviting you to join others online and share as much as your personal health information as you so wish, to ‘help spark health innovation for all.’  It’s interesting how heavily they plug patient confidentiality with the privacy controls reported as being ‘unprecedented.’  Other than not signing-up at all of course.

Don’t forget there is also the Government’s very own UK Clinical Trials Gateway (UKCTG) whose future development I am very involved in, as well as ClinicalResearch.com,  TrialReach, HealthUnlocked, YourTreatmentChoices .  Funny how almost all of these sites miss out the spaces between the words in their titles isn’t it?  I wonder what that is all about.

 

Anyway, the market of organisations competing for the attention of patients entering clinical trials gets busier by the day.  This seems a healthy thing to me on the one hand.  On the other, I feel patients will want to see a ‘coming together’ at some point.  Although not necessarily in the way that you might assume; it might take many forms in fact.

Agreement on some common principles and standards for how to operate as in the manner of a learning health system (there are some interesting precedents in the US for this with respect to data use)? Partnership, merger or co-operation?  Perhaps formal regulation (by the Health Research Authority)?  But, most of all, integration with their care and treatment in the NHS and how this is provided.  There will also be a growing demand public involvement in how they work; more than any of the above providers can currently demonstrate.  Also,demands for reassurances over the ‘patient experience,’ with the AllTrials agenda just the tip of the iceberg in how I predict people will increasingly set higher expectations with clinical trial providers, and those who recruit on their behalf, before signing the consent form.

Finally, here is a brief interview with Scotland’s Chief Scientist, Dr Andrew Morris.  He talks about the importance of research being integrated into NHS care and treatment if we are to grow cohorts of patients who are active in research and the building of systems that enables that.  He references the well-known DART initiative in Scotland involving 7000+ people with diabetes.

I’m off to watch the rugby now.

%d bloggers like this: